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Medical Forum / Diseases and Disorders / Epilepsy / February 2005Epilepsy with Unruptured Aneurysm
Hi, I'm new here. My name's Jane. I've posted at alt.med.fibromyalgia quite a bit in the last eight years. They recently found a "Giant Berry Aneurysm" on my left Temporal Lobe and I'm having it coiled on Feb. 15th. I've probably had the aneurysm for a long time (I'm 42) but something might have happened to it in the last six months or so that cased it to start putting more pressure on my temporal lobe and I started having what I now know are simple and complex partial seizures. I went to the doctor because of the seizures and they found the "Giant" aneurysm. It's 2 cm -- anything over 1.5 is called a giant. I was in hospital for a week under observation, but they let me out for about three weeks prior to treating it, and since that time I've had WAY more seizure activity than I did before they found it, did an angiogram and all that stuff. I'm on 200 mg of Tegretol 3 times a day and having been having simple partials at least once every couple of days, sometimes as many as five a day. I have twitching hand, foot, head and such, and get very slurred sppech and make odd decisions. I remember these 'states' but can't shake myself out of it when it's happening. I also have very low blood pressure. My doctor asked me to check my BP every day to make sure it didn't get ABOVE 140/80, so my pharmacist lent my a BP monitor to take home. My doc didn't say anything about LOW BP though and mine's been, like 106/63. I don't know whether to be concerned about that. I'm also wondering about the likelihood of having MORE seizure activity *after* my coiling procedure next week. I'm wondering about TONS of stuff. I'm worried sick, to be honest, but also trying to stay calm and detached if I can. Any thoughts? Take GOOD Care, Jane Howdy Jane! WELCOME!! Don't know whether the number will increase or decrease. You should be prepaired to face the issue that you may have seizures for the rest of your life. Brain lesions (scars) are one of the primary causes of epilepsy. I would suggest that, for now, you take it one issue at a time. First have your surgery. Afterwards you see what happens with your seizures and you can take it from there.  SignatureDave ???? http://www.howdydave.com > Hi, > [quoted text clipped - 34 lines] > > Jane > Hi, > I'm new here. My name's Jane. I've posted at alt.med.fibromyalgia quite [quoted text clipped - 40 lines] > Take GOOD Care, > Jane Hi. You found the right group. Some replies might come in over next 2-4 days with Weekend, plus timezones people post from (about 10?) My C.P. seizures are controlled with Tegretol and Clobazam and in Right Side T.Lobe, but in case your Pharmacy didn't already tell you -- alcohol can affect blood levels of Tegretol, as can Grapefruit Juice. If the Pharmacy didn't give you a printout with first prescription, there's a Glossary of Medications with printable format under http://efa.org U.S. Ep. Foundation site. Possibly after the surgery is done they may reduce (slowly) or remove some of the med. levels. But I'm not a Dr. so this might be different. You found the right place (or one of them at least). There are a large variety of experiences with either levels of treatment, or seizure types and medications around here. Welcome to our neighbourhood in the meantime. G. (Gordon) / > Hi. You found the right group. Some replies might come in over next 2-4 > days with Weekend, plus timezones people post from (about 10?) Thanks! > My C.P. seizures are controlled with Tegretol and Clobazam and in Right > Side T.Lobe, but in case your Pharmacy didn't already tell you -- alcohol > can affect blood levels of Tegretol, as can Grapefruit Juice. If the > Pharmacy didn't give you a printout with first prescription, there's a > Glossary of Medications with printable format under http://efa.org U.S. > Ep. Foundation site. Yes, both the doctors and my pharmacist warned me against alcohol or grapefruit juice and I don't drink either anyway. I'm not a tee-totaler (or wasn't before all this started) but I probably had three drinks since Christmas. I haven't had any alcohol since this all started with my being rushed to hospital by ambulance on Jan. 19th. > Possibly after the surgery is done they may reduce (slowly) or remove > some of the med. levels. But I'm not a Dr. so this might be different. My Neurologist says I should be on the Tegretol for a while after the coiling, but I'm seizing through the Tegretol and having way more seizures than I was before they found the aneurysm. I wonder if the angiogram they did irritated the aneurysm and therefore the temporal lobe even more than it already was. > You found the right place (or one of them at least). There are a > large variety of experiences with either levels of treatment, or seizure > types and medications around here. Welcome to our neighbourhood in the > meantime. G. (Gordon) / Thanks Gordon. Glad to be here. Thanks also to Dave. The 'Eyes' have it, Dave. :o) My Janey Pooh moniker comes from the fact that I'm really into the philosophy of Winnie The Pooh, as studied by Benjamin Hoff in "The Tao Of Pooh." Anybody read that? Anyway, that's why I'm called Janey Pooh -- because I study The Tao for relaxation. Didn't help me not get an aneurysm, but it's helping me not have an aneurysm over it. ;o) Take GOOD Care, Janey Pooh Janey, Did your doctors discuss any risk of hemoraging before the surgical procedure? Hopefully you aren't having sub acute bleeding which could irritate the surrounding brain to cause increased seizure activity. I have simple partial seizures as the result of a tumor in my left temporal lobe. The drug "Keppra" has been particularly effective used in combination with a primary AEP (in my case Dilantin but could also be used with Tegretol). If your seisures persist suggest you ask your neurologist their thought about putting you on Keppra. I've chatted with a number of people who've had focal simple partial seizures that have had good experiences with the drug. Hopefully you won't need it but just in case. Good luck with your procedure, Bill > > Hi. You found the right group. Some replies might come in over next 2-4 > > days with Weekend, plus timezones people post from (about 10?) [quoted text clipped - 39 lines] > > Janey Pooh > Janey, > > Did your doctors discuss any risk of hemoraging before the surgical > procedure? Hopefully you aren't having sub acute bleeding which could > irritate the surrounding brain to cause increased seizure activity. No, my neurosurgeon didn't really think it would hemorrhage prior to the procedure, because most of the aneurysm's clotted and only the middle 5-7 mm is fresh. Hopefully I'm not having sub-acute bleeding. Hopefully. Hopefully. No, really I think it's a combination of getting used to the drugs, anxiety over the whole thing, and blood pressure fluctuations (again, because of meds). > I have simple partial seizures as the result of a tumor in my left temporal > lobe. The drug "Keppra" has been particularly effective used in combination > with a primary AEP (in my case Dilantin but could also be used with > Tegretol). I was on Dilantin when I first got out of the hospital and had horrible side effects from it. Over a few days, I lost my ability to put words into sentences, couldn't find the words for things, got all slurry and droopy eyed and somnolent. I turned into a staggering drunk, then started to shake constantly, one arm, one leg, my head, and went back to Emerg in the smaller city near us. (I live in a small town, but I'm being treated in a big city hospital 2 hrs. away, with a smaller city hospital 1/2 an hour away -- long story over the past three weeks.) Suffice it to say, they switched me from Dilantin to Tegretol a couple weeks ago and don't want to mess with the meds anymore 'til after the coiling. > If your seisures persist suggest you ask your neurologist their > thought about putting you on Keppra. I've chatted with a number of people > who've had focal simple partial seizures that have had good experiences with > the drug. Hopefully you won't need it but just in case. > > Good luck with your procedure, Bill Thanks Bill. It's an unusual aneurysm, but I have a really good Endovascular Neurosurgeon doing the procedure and an excellent Neurologist is helping me through too. My family doctor's not bad, but he seems kinda out of his league on this one right now. It's all been quite the shocker and unexpected and I'm basically just sitting here waiting for Tuesday. As for what the future holds, I guess I'll see when I get there. ;o) Take good Care, Jane >> Janey, >> Did your doctors discuss any risk of hemoraging before the surgical [quoted text clipped - 28 lines] > smaller > city near us. *** 'They" still seem to use Dilantin first since it's older, longer studied and cheaper, for those who can use it, but there are Lots of us here who weren't able to use it for long and maintain control. I think when I was first on Tegretol, and at target dose, it was about 2-4 weeks before they did Bloodwork to see if I was maintaining the Target Dose they wanted for control. (Some people purge meds. out, quicker than others, so may need different dose levels than the 'book values' set by age, body weight, etc.) ** I forgot to ask earlier if your "Tegretol" is a Controlled Release version (XR, CR, or Retard) ? Those give a longer window where the pills can be taken (if twice a day) so that timing to e.g. 12 hours plus or minus 30 minutes, *isn't as important as some Un-Time Released types of pills might be. (I only use Tegretol CR in AM now.) You sound like you have a Good Neuro so he'd be a good source for correct type of pills to prescribe, and what to watch for. Some sites Tegretol was also used for Post Op. Heart Patients too? so I don't know if it does any Blood thinning or why it helps them also. (I have a 'thin blood' factor, so if it were a concern for me, my Own Neuro would have advised me about that in 1994.) /G. > Suffice it to say, they switched me from Dilantin to Tegretol a couple > weeks [quoted text clipped - 18 lines] > Take good Care, > Jane > Hi, > [quoted text clipped - 23 lines] > and mine's been, like 106/63. I don't know whether to be concerned about > that. http://www.nlm.nih.gov/medlineplus/ency/article/003083.htm is a link to the National Library of Medicine article about low blood pressure. Actually, your BP appears to be in the normal range according to the NLM. In real life, and I think there is some newer research than the NLM page, the second number should be below 80. If you aren't fainting, aren't getting dizzy or having other low BP symptoms, don't worry abou it. People with lower blood pressures live longer. Come back after your surgery and let us know how it went. Barb > I'm also wondering about the likelihood of having MORE seizure activity > *after* my coiling procedure next week. I'm wondering about TONS of stuff. > I'm worried sick, to be honest, but also trying to stay calm and detached if > I can. > > Any thoughts? > Take GOOD Care, > > Jane |
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